How Trying to ‘Fix’ My Disability Made My Hands Worse

Posted in In My Feelings

Hey, guys! Welcome back to The Wheelchair Teen (even though I’m technically not a teenager anymore 😊). One of the reasons I love blogging so much is because it’s helped me to come to terms with some of the most difficult experiences in my life, like losing the ability to walk, by sharing about them. Recently, something happened that made painful memories of my past come rushing back. And it made me angry. Angry because trying to force Disabled people to be as nondisabled as possible instead of embracing who we are can have serious negative effects. Angry because I carry the proof of that with me wherever I go.

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My hands before they were straightened

I was born with curled fingers on both of my hands. They didn’t look like the hands of the other children in my class but they served their purpose. With the limited function I had in my fingers I was able to hold a pen to use for writing and drawing, pick up items off of the floor by myself, and type on a computer. They weren’t as efficient as nondisabled fingers but I got by just fine with them.

Two pictures. The one on the left is of me as a young child with my chin resting on my hands. You can see that my fingers are curled inwards. The one on the right is of me when I was younger with my chin resting on one hand. My fingers here are also curled.
Pictures of me when I was younger. You can see that all of my fingers on both hands were curled inwards.

For almost my entire childhood, my doctors made it their mission to straighten my fingers. I remember countless hand/wrist splints which were made to hold my fingers down in place and straighten them out. Me and my parents would spend hours in the splint workshop with a wet, hot mould wrapped around my hand. I would play with Playmobil and Lego while it cooled down and became hard in the shape of my hand. Then Velcro straps would be threaded through it to hold my fingers down. They even created night splints for me to wear while I was sleeping so that my fingers could straighten as much as possible overnight.

Two pictures. One on the top of three of my splints lined up. The second is of one of the splints strapped to my hand.
Photos of some of my childhood hand splints, created to straighten my fingers

I remember how uncomfortable and horrible they felt to wear, but for the most part, I liked the splints. I was allowed to play while the material moulded to my skin and I was allowed to pick my own colours and patterns for them so that they would look nice. I never really understood why I needed them when I was a young child. The doctor said that my fingers needed to be straightened so of course me and my family did what they told us.

I would give anything to be able to go back in time and ask them: why? WHY? Why was it so important to them for my fingers to become straight like other children’s? Why did it matter that they weren’t? Was it to make them look ‘normal’? Was it because straight was the nondisabled way so naturally that was the right way? I’ll never know why and that fact hurts.

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My hands after they were straightened

My left hand and right hand laid next to each other on the table. The fingers on my left hand are curled inwards and the fingers on my right hand are straight.
A picture of my natural left hand next to my straightened right hand

While I was still in primary school, I underwent a minor operation on the nerves in my fingers on my right hand. I was very scared, and once again, I don’t think I understood much about the process, what was being done, and why.

I remember the pain afterwards and my sister playing Hakuna Matata to try and cheer me up. I hid how much it hurt and put a smile on my face to show her that I appreciated her playing the song to try and make me feel happy. I remember chasing my friends around the playground with my hands because they were scared to look at the stitches. I remember screaming after falling at home and putting my hand full of new stitches out to break my fall.

After I healed from the operation, the doctor’s got their wish – all of the fingers on my right hand became permanently straight. And as a result, I lost all of the movement in the fingers on my right hand too. I was no longer able to pick up a pen to draw and write with anymore. Having to deal with losing that ability was the toughest thing I ever had to face when I was a kid. I remember crying for months and asking God why he’d let me fall in love with creating art only for it to be taken away. Eventually, I had to start from ground zero and teach myself to type, write, and draw with a pen in my mouth instead.

My hand may now have looked ‘normal’ but who cares? So much had been taken away from me by trying to force me into a box I wasn’t created to fit. There was nothing wrong with my hands, they were just different. And I loved them just the way that they were.

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The realisation that it was wrong

Recently, while in church, I was talking with a close friend (who I’ll call Sister Suzie) who also uses a wheelchair. She came to church that day wearing a splint. Sister Suzie gestured towards it and told me that her doctors were making her wear it to straighten her fingers out. I stared down at it and started to feel sick. Sister Suzie has way more finger function than I had ever had. She could feed herself, fully grip objects, even individually raise her fingers – something I’ve never been able to do. I couldn’t understand why and when I asked Sister Suzie about it – neither did she. An overwhelming sadness took over me. And then that sadness turned to anger.

A picture of my hands wrapped around a plant pot with a green spotted heart inside of it
A photo of my hands holding a potted heart

To quote Disability activist Stacey Milbern: “Is medicine about quality of life or is it about social control and perpetuating this idea of like, a good body?” Not all the time, but sometimes I feel like it is. The Disability community isn’t ashamed of the things that make us different. We know that nondisabled doesn’t mean ‘standard’ or ‘neutral’ and everything else: ‘wrong’. Maybe it’s time for doctors to realise this too. Especially since a lot of Disabled people and their families don’t know any better and will not question the advice of a medical professional.

But the negative stigma our doctors may hold towards Disability shouldn’t be negatively impacting our lives. When I lost the movement in my hand, it was one of the darkest times of my life and I was only 11-years-old. No Disabled person should be forced to change themselves to fit a nondisabled box. Doing things to yourself or undergoing operations to make your life easier is understandable – but needless treatment like this is not. My ‘pretty’ yet limp straight-fingered hand is forever a reminder of that.

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Thanks so much for reading ❤ Have you ever experienced something similar? Let me know in the comments below. I’m not going to post next week Saturday because I’m going to Prague for a week. See you in two weeks!

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Published by The Wheelchair Teen

I am a black, disabled teenager and my blog shares my personal experiences, some of the struggles and triumphs I’ve been through, as well as posts that educate people about disabilities to help end discrimination against disabled people.

122 thoughts on “How Trying to ‘Fix’ My Disability Made My Hands Worse”

  1. Big hugs to you! I’m so sorry!! What a heartbreaking experience that had to be for you. Definitely not worth having “normal” looking fingers to lose your abilities. Thank God you were able to learn different ways to do those things at least, but still so wrong it was taken from you in the first place. ❤

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    1. Thank you, I appreciate the hugs. Yes, I’m very grateful that I learned to adapt and found other ways of doing things. Things are a bit easier now because my Disability has progressed a lot since then and I’m used to losing abilities and adapting but, at the time, that was the first major change in my condition which was why it was so difficult to deal with. It was so wrong, I’d still like a sit down with those doctors. But thank you so much for your encouragements, Cynthia! You always manage to put a smile on my face.

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      1. You’re very welcome!

        I’m sure! That had to be very tough to get used to, especially as the first ability lost & you were so young too. Hopefully you can talk to those doctors one day. I pray your blog reaches many people, including those in the medical field.

        You’re welcome for the encouragement! And, thank you for your kind words ❤

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  2. As usual, you’ve written another poignant piece. As I read it, I couldn’t help but think that your right hand wasn’t disabled before the surgery. It was differently abled, since you had the ability to move your fingers, to create. It became disabled after the doctors got hold of it. I have arthritis in my left wrist with a bone spur. It has a bit of swelling at times, and it keeps me from doing things like pushups. I talked to a specialist about surgery. He was honest in telling me that surgery would result in me losing some mobility. I chose to live with the minor amount of disability I have.

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    1. Thank you so much, I’m really glad that you enjoyed it. Although I actually don’t like the term ‘differently-abled’ as it’s always seemed patronizing to me and like people are trying to dance around the word Disabled and make it sound nice when actually I’m very proud to be Disabled. I think that’s why most Disabled people reject the term physically-challenged. But you are right that there was nothing wrong with my fingers before the doctors got a hold of them. It’s good that you were able to make a decision that was best for you. I respect you for that. I’m also happy that your specialist was honest with you about this. Clear communications between medical professional and patient is key. Thank you so much for sharing, have a great weekend! ❤️🌻❤️

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  3. As you were so young, the lack of communication with the medical team was also to blame.
    It is most commendable that you find a solution to your problems, and you are so positive!

    Joanna

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    1. Yes, medical professionals really need to do better to communicate with their patients and really explain treatment, what it does, and why it’s needed. Thank you so much. I’m definitely a problem-solver and an adaptor and I think my positivity comes from my self-acceptance and knowing my own worth. I always appreciate your kind words, Joanna. Have a lovely day! ❤️🌼❤️

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  4. I just read your reply after my post part 3 about Swami Ji, where you asked how I got into writing.
    I wrote that I studied Literature at the university, and accumulated 10.000 books at home.
    That is why, I write about interesting people.
    I am glad that you like the story of Sami Ji’s extraordinary life.

    Joanna

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    1. 10,000 books is so many! Wow, I’m envious! Both of my sisters studied Literature and Creative Writing at university. I very nearly did the same but I’m more a performer. I’m glad that your passion for literature inspired you to write about interesting people. There are not many other bloggers I’ve come across that make the content that you do 😊

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  5. I’m so sorry you had to go through such tough time. I don’t know what to say it’s painful. I’m proud of you for spreading awareness on this topic. People just don’t understand that we are beautiful just the way we are. I know that it must hurt when you get reminded of what they took away from you, but you know you came back stronger than ever and you’re doing well.

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    1. It’s okay, tough experiences like this made me who I am today. Thank you so much, your pride means a lot. Being able to spread awareness about it now is one of the good sides of having gone through it. You’re right – people forget the beauty of our own natural selves. I am touched by your words, thanks so much for this encouragement. I feel as if you deeply understood this post ❤️

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  6. Thank you for sharing. So many lessons to learn from your wise words.
    “… by trying to force me into a box I wasn’t created to fit…”
    This stood out for me.
    Keep sharing and inspiring 🤍🙏🌹

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    1. You’re very welcome. I’m touched that that quote stood out to you. No one should really be put into a box, we’re all too unique to fit into them. Thank you so much ❤️ Keep writing poetry and moving others with your words.

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    1. It was an emotional write! But I’m very thankful that it’s out there raising awareness now. This comment truly touched me. It means a lot that you would think so much of my voice. You’re welcome, I’ll keep fighting and sharing that voice. I’ll always keep fighting ❤️.

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    1. I’m glad too, it feels great to be able to use my voice to empower and educate others. Thank you so much for these kind words. My strength and resilience have helped me to face every challenge in life, it’s such a nice thought to think that they might now be helping others ❤️.

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      1. I am noticing for the first time today that my fingers are often curled; as I move around, as I hold a fork, as I type. Babies hands are curled in the womb and when they are growing up. What’s wrong with curled?

        My outer ACL on my right knee was permanently cut in a surgery when I was 21. A chiropractor could have moved the kneecap back into place without surgery but I didn’t know that then. I’ll can walk anew. Perhaps with science I’ll one day grow a new ACL.

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      2. Very true. Curled is natural if you think about it. You’re right – there are so many situations in which we curl our fingers. Oh wow, I’m sorry something went wrong for you during a surgery too. Sometimes they’re not as safe or necessary as we might think.

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  9. This was heartbreaking and infuriating. How could the doctors not know that they were harming you? I don’t think it was the first time they were using that procedure. Anyhow – now you have the means to spread awareness about it at least. And I hope it’s not too late for Suzie to make a different choice.

    I’m in awe of all the things you can do using your mouth in place of your hands.

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    1. Indeed, it felt emotional to write. I have no idea how they couldn’t know. It was a seriously bad carrying out of treatment. True, one of the good things to come out of this is that I can now write about it and spread awareness. I think I might have another conversation with Suzie about this, just to make sure that she understands that she has a right to ask her doctors why they’re straightening her fingers if she wants to.
      To be honest, I’m in awe of everything people can do with their mouths too! I never really realised the possibilities until I lost the function in my fingers. One thing that the Disability community has taught me is that the human body is capable of so much more than we could ever imagine. I’m constantly shocked to see all people can do with their mouths, feet, and elbows.

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  10. What you describe is not one of medicine’s most shining moments. How misguided and arrogant! We should not be the victims of such mistreatment. Thank you for writing about this. Maybe it will help someone else avoid what you went through. Take care, Simone. Hope you have a lovely trip to Prague! ❤

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    1. It certainly isn’t. You’re right – we shouldn’t be treated to such mistreatment and medicine like this is extremely misguided. You’re very welcome. I hope that it does, writing about this was difficult, but it’s all worth it if it helps others to avoid having to go through the same. Thank you, I’m really looking forward to Prague! I hope that you’ll take care too ❤️.

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  11. Little sister I am so sorry that happened to you. It is so sad that they did not when you were not old enough to consent to the procedure. It makes me admire you even more for your faith and resilience.

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    1. I’m sorry too, it definitely wasn’t right, but at least what I went through helped to shape me into the person that I am today. I now love doing things with my mouth. Thank you, I’m very touched that you admire my faith and resilience. My faith was a big part of what helped me to get through after I lost the function in my fingers ❤️

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  13. I’ve known a number of people in my life who opted for extensive medical procedures and were sorrier afterward than before. Even the “success” stories can have some pretty gruesome side effects. Best to go with what God gave us, I 🤔 ink, unless there’s a deep personal wish to use surgery in the context of a greater self transformation.

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    1. Yes, it definitely happens. Luckily I didn’t have any gruesome kinds of side effects – just lost function. I agree, I feel like that’s always the best option. I just was told this operation was necessary as a kid so I assumed that I needed it. Clearer communication was definitely needed.

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  14. That’s understandable you got triggered back to that time in your life Simone.
    That’s so hard to remember that time and the hope that things might have been different. All of the pain had to be so hard. You have endured a lot and usually old triggers are opportunities to heal deeper. I’m going with that and sending you lots of love and big ❤️🤗 ❤️🤗❤️🤗

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    1. It was difficult to be triggered back into that time, but at the same time, I’m almost thankful that I was. Like you said, it gave me an opportunity to heal deeper and it feels good to be able to take my negative experiences and now be able to use them to raise awareness for others. Thank you so much for these loving words and for the hugs. Your heartfelt words always know how to uplift me despite discussing a dark topic. I hope you’ll have a great week while I’m away in Prague, Cindy. (And Barbie was amazing by the way!)

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      1. I can imagine it was and I love that you used it as an opportunity to heal deeper and support others more in the process too. A twofer.. YES! It’s always my delight to support you. I’m glad it was helpful. Oh you have the very best time. Thanks so much for your lovely wishes my friend💕❤️💗

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    1. You’re very welcome. I hope that my thoughts and ideas will, as there certainly needs to be a change in how those with Disabilities are cared for. Thank you so much for these kind words, I sincerely appreciate them. Have a great week! 🌻

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    1. Thank you so much for these kind words. What I went through made me who I am today and, as you said, my faith was always a strong foundation for me to lean on in times of trouble. Thanks! I’m already here in Prague and really enjoying it 😊 I hope that you’ll have a great week too.

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  18. seeing a link to all the wild plastic surgery out there, too… as always, much appreciate your sharing your wisdom. can’t wait to hear about Prague! wishing you a great time!!!

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    1. You’re right, there almost is a link between this and plastic surgery, I’d never even thought about that before. If I was old enough, or if the doctors had actually clearly told my family that it was that kind of unnecessary procedure, I never even would’ve gone near that operating room. I can’t wait to enjoy Prague! Aw, thanks 🥰 I wish you a great week too! ❤️🌼❤️

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      1. Praise God, you are. Doctor’s have some nerve deciding that something they studied in their medical journals is the only acceptable standard for our future outcomes. How often have they done more damage, than good??

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  21. As humans I feel like we’re always trying to fix and fix things until we’ve ruined them. I’m so sorry this happened to you and felt myself even getting angry reading through your post. Hopefully you can be a guiding light in your friend Suzie’s journey and help her listen to her gut feelings you both had.

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    1. I agree. Sometimes I think we need to learn to just leave things and naturally accept them as they are. Thank you, I can understand, it made me angry too. I hope I can be that light for Suzie, she’s such a kind soul and she still has time to not make the same mistakes that I did. Thank you so much for your kind words, I really appreciate them ❤️

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  22. Oh my goodness Simone this is so horrible, but happens more than we realize. Is so incredibly tragic that it took all of the tinkering from the doctors to realize that they dis-abled your mobility from all of these so called modifications. I agree with the quote you included from Disability activist Stacey Milbern, “Is medicine about quality of life or is it about social control and perpetuating this idea of like, a good body?” Sometimes we want to correct what we think needs to be corrected, when we need to leave well-enough alone. Thank you for sharing your story. 😊🙏🏼💖

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    1. I definitely agree. Sometimes instead of trying to ‘fix’ everything, we need to leave things as they are and learn to accept what we’ve naturally been given. I was upset because I’d always accepted my curled fingers – it was the doctors that made me believe they needed to be straightened. But I couldn’t imagine myself today without hammering away at my keyboard every day with a pen in my mouth so I don’t regret that at least. And now I am able to spread awareness about this at least. I’m glad you agreed. You’re welcome, thank you so much for understanding, your words always brighten up my day.

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      1. Bless you Simone. I admire your courageous spirit in spite of the challenges you faced and continue to face to this day, that you did not allow to smother you in a downtrodden and defeated spirit. Continue to stay strong and empowered, because you are still here and continue to use what God has given to you, albeit others may not think that way, to serve your purpose and His. Make this week a FANtabulous one! 🥰🙏🏼😍🌟😊

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  23. You know, this is exactly the issue with medicine. As humans, we’re not all the same and forcing people to be the same or their version of “perfect” is really problematic. I am so sorry about your horrible experience. But the sad truth is that this happens a lot in medicine and many times doctors actually overlook the safety and proper care of patients.

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    1. I definitely agree. No one fits the box of ‘perfect’ really, especially not a medical professional’s version of ‘perfect’. It probably does happen a lot. Posting this post and reading people’s comments has helped me to see that. Thank you for your kind words though. The support that I receive from you guys definitely makes up for everything ❤️

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  24. Thank you for sharing this. I’ve read a similar complaint from non-hearing folks (I apologize if I got the terminology wrong!), that they didn’t need Cochlear implants to be like people with hearing. It made a big impression on me.

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    1. You’re welcome. Yes, Deaf people often say the same thing – that their Disabilities don’t need to be ‘fixed’ and that it’s okay to not be or live like nondisabled people because that’s not the only way to live. I’m glad it made an impression on you, it is a really great example.

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  25. I was just having this convo with someone on my blog about how sometimes doctors think they know what’s best but it isn’t always in the best interest of the person who knows their body the best. I’m so sorry this happened to you and I think a lot of medical professionals need to learn that “fixing” isn’t always helping.

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    1. Yes, it’s very true that doctors may be professionals, but we actually live in our bodies and we know them better than anyone. Thank you, your support means a lot. Hopefully there’ll soon be a change in the medical community so that they can understand exactly what you said – that ‘fixing’ isn’t always helping.

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  26. Wow. Simone, I know I’ve said some variation of this before, but I have to say it again. I love your blog because it shows me so many things that I’ve never considered. I would have never known that doctors were performing needless surgeries on people. From what you’ve described, it does seem as if the point is only to give the appearance of so-called normalcy, while ignoring quality of life. I’m sorry you had to endure this, but again, I’m glad you shared it. Awareness is important because it can lead to perspective, which can decrease ignorance.

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    2. It is sad but I’m happy that more people are becoming aware of this by reading this post so that they can be more careful about these kind of things than I was when I was younger. You’re right – awareness is definitely important and I hope that sharing my story here has made a difference. Quality of life should never be prioritised over a doctor’s idea of normalcy. Thank you for understanding and for your support. I’m always very touched to hear that my words are helping to educate others so thanks so much for these kind words.

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  27. This is so strange, I am truly sorry that this has happened to you! I recall in my childhood in the 1980s it was common for children to be put on some horrendous boots to fix orthopedic problems that today nobody tries to fix. I was one who spent the best part of my childhood on those and I remember a pair I had to sleep with that was attached by a metal bar so my feet would be turned to the outside of my legs to try to fix an “arch” on my lower leg. I woke up one night and still half asleep I tried to walk to the bathroom with the boots attached, feel, hit my head and had a concussion. I must of been nine years old. My parents finally said “enough” when that happens. Today we don’t do these things to children anymore, doctors are more aware of risks/benefits of such treatments.

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    1. I’m sorry that you experienced something similar when you were younger. I’ve definitely seen people from the 80s talk about having to wear boots and spine-straighteners and things like that. It’s frustrating to look back and realise it was never even necessary in the first place. Your parents definitely did the right thing. It’s true that these days doctors are more aware of risks/benefits of treatment but they still unfortunately have more to learn because what happened to me happened around 2012 and is still happening now. Thank you so much for sharing, Alessandra, I learned a lot from this comment.

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  28. Pingback: How Trying to ‘Fix’ My Disability Made My Hands Worse

  29. I’m so sorry you went through this – it’s so disappointing that the doctors did this! I think they should’ve given more consideration to what YOU wanted and how your well-being and mental health would’ve been affected! Because it may be fitting the societal beauty standard of perfection, but that means nothing if you can’t do what you love! I’m glad you were able to make the most out of the situation, and create this blog to share your experiences and learn again with your mouth!

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    1. I agree – It would’ve been much more helpful if they’d given more consideration to what I wanted with my own body rather than projecting their own biases onto me. This actually reminds me of the blog post that you just wrote about societal beauty standards, I’d never really considered that that might have had a part to play in why my doctors wanted me to change but it probably did. I’m glad too, and I’m happy that by doing so, I’ve been able to make some great blogger friends like you 😊 Thank you so much for the support.

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  30. Thank you for sharing!!.. it is sad in today’s world that even with all the knowledge, societies won’t accept another as who they are and/or wish to be… no where in nature or the universe is there perfection, hopefully one day wisdom will prevail “The saddest aspect of life right now is that science gathers knowledge faster than society gathers wisdom” (Isaac Asimov)… 🙂

    Hope all is well in your part of the universe, life is all that you wish for it to be and until we meet again…
    May your spirit only know peace
    May your heart only know love
    May all your dreams come true
    May your life’s journey be filled with happiness
    And life is all that you wish for it to be….
    (Larry “Dutch” Woller)

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    1. You’re welcome 😊 Very true, perfection doesn’t exist. Instead, we should all naturally embrace and accept each other as we are. I wish that the medical professionals who were assigned to me had realised that too.

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  31. You are so right my dear. I have a cousin who was born with her feet turned inward so she walked on the back of her feet. They had to make special shoes for her. When she was young the doctors decided to do surgery on her feet to straighten her feet. After the cast was removed her feet returned to the original position. Fortunately, she was able to walk and her parents did not allow the doctors to operate on her feet again.
    Thank you for sharing these valuable lessons with us. You are a wise young lady.

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    1. It’s eye-opening how many things like this have happened before and continue to happen. Thank you for sharing. I’m happy she was still able to walk after the surgery and that her parents didn’t allow the doctors to operate on her feet again. Thank you so much for such a kind compliment. Thankfully, I wasn’t alone on my journey.

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    1. Definitely, sometimes we should. As much as doctors may study medicine, we know our own bodies better than anyone so there should at least be a conversation about the best form of treatment. Your support and compassion means a lot. In hindsight, what happened made me the mouth-painter I am today so it wasn’t all bad.

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  36. So sorry to know about heartbreaking experience you had. I appreciate your positivity in solving the problem. Keep sharing your inspirational story.

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    1. I’m very happy you appreciate my positivity. I know who I am and I stand firmly upon that so that is what helps me to face everything that I go through. I’ll definitely keep sharing my story. Thank you so much for the care and support, I really appreciate it ❤️

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  37. This made me so sad for you and angry at the doctors: “Having to deal with losing that ability was the toughest thing I ever had to face when I was a kid. I remember crying for months and asking God why he’d let me fall in love with creating art only for it to be taken away.” Bless you, dear Simone. I learn so much from you – you are an excellent teacher.

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  38. My son has Retinitis Pigmentosa from birth. He says what you have written. People suggest different ways in which he can see better. He says he has lived with his disability from birth and does not find it a problem that others feel it must be. When he was 1 year old, we did get an operation done. But after that we let him grow his way with our support. In 2016 he completed his Phd in English Literature and since then he is teaching in the Department of Languages of the University in our place. I wish you all the best in your life.

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    1. Thank you so much for sharing, I really enjoyed reading about your son. I’m glad that he understood that his Disability wasn’t a problem despite others around him thinking that it was. And look at all that he’s gone on to achieve! He’s definitely lived a very successful life. Thank you, I wish you and your son all the best too.

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  40. To say how sorry I am that this all happened to you is not to be able to match the feelings you stirred in me reading your “story.” How great that you can do seemingly super human things with your mouth!! That really shows your strength and big heartedness and the strength of the human spirit. I am mentally ill and old and losing physical abilities from age on top of mental disability is challenging. Thank you for liking a comment I made. Hats off to you and may God bless you. 🙏🏽

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    1. Thank you so much for the very kind words. You’re welcome, it was a very nice comment, I’m glad that I liked it 😊 It means so much that my story stirred emotions in you. Yes, teaching myself to create art with my mouth wasn’t easy but it now feels like such a rewarding thing to do which I’m very passionate about. It showed me that the human body is capable of so much more than we know. I’m sorry you’re challenging with losing abilities. It’s all about adapting and realising that maybe things won’t go back to the way they were before, but we can still accept our current bodies now, learn about them, and use them to the best of our abilities. That’s what I did when I lost the ability to walk or to write. I’m not worse off now – I’m just different. I do things in different ways and I accept what I can’t do anymore. Wishing you all the best. God bless you too ❤️

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      1. You are a total inspiration to me, and, to many othersas well. Don’t be sorry for my losses. It is part of life and growing old. I did lose my best friend and brother way too young but I have a huge blessing in my husband.
        Don’t lose your passion to do art with your mouth. I was an artist and may go back to it but circumstances change. Don’t lose your inspiration.
        Keep positive… you have my best wishes and admiration!💕🙏🏽❣️❤️

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  41. I am sorry that something supposed to help didn’t. You are so right to question why our medicine wants all of us to fit in a one-fits-all scheme. With that you help me question things too. Thanks. I am glad Prague was a lovely stay and thanks for stopping by my blog 🤗

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    1. I’m happy that you found this post to be thought-provoking. I felt it was really important to question it because it had a big impact on my life. Prague was a lot of fun 🥰 And you’re welcome, I really enjoy reading your blog🌻

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  42. Dear Simone—Did you post about Prague? This is the most recent post I see in Reader.

    I knew how strong and remarkable you are when you started your blog. I wonder if you realize that you’ve turned your gap in writing into a very brief time lapse—picking up where you left off, now enriching your writing with more mature observations, but recapturing all of us who have grown to care about you and are grateful that you share your thoughts and talents with us. It’s an extraordinary accomplishment.💐

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    1. I haven’t posted about Prague yet, by now, you’re all caught up. Thank you so much for this very touching comment. I was originally unsure about returning after such a long gap so this is just wonderful to hear. It does feel like I’ve learnt a lot and have been able to grow since I was away. I’m glad that that shows. Thank you for always being such an amazing support, Annie. People like you help to make The Wheelchair Teen what it is – a space where I can be myself and help educate others.

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  44. Wow, thank you for sharing this story. It does give me a different perspective. I am so sorry for all you have had to go through, and you are such an inspiration as you share with us a glimpse into your daily life. And it is a reminder to all of us that we need to embrace and appreciate our differences. The older I get, the easier it is for me, but when I was younger, it was hard. Blessings to you, dear Simone! 🙏🤗

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    1. You’re welcome. I’m glad you were able to learn something new from this post. Definitely, the world would be a much better place if we all embraced our differences and didn’t shame each other for the natural parts of us that we couldn’t control. Hopefully, things will get a little easier for me as I grow older as they’ve done for you. Blessings to you too xxx

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  45. I’m so sorry that happened to you. 🥺 I know a lot of people still consider doctors an authority to be followed unquestionably, but doctors don’t even all agree with each other. I like what an elderly man at my church says, that ‘there’s a reason why they say doctors “practice” medicine’. Kudos to you for being brave and perseverant and learning to write and draw with your mouth. You’re amazing!

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    1. Very true, doctors often call other doctors in when working on unique cases in order to get a second opinion. I hadn’t really thought about that before. That’s a very wise quote. As trained as they are, doctors don’t know, and could never know, everything. Thank you so much! 😊❤️🥰

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      1. I think some insurance companies actually pay a second doctor for a second opinion if the patient requests it. My elderly friend had to get a second opinion. The first doctor diagnosed him with something that caused him to lose his driver’s license. It was so hard for him not to be able to get around. The second doctor disagreed with the first doctor’s diagnosis. Now he is able to drive again.
        I know and love someone else whose doctor created a huge problem that took five surgeries to fix.
        Over time I have stopped just accepting what the doctor says as though it were true. They are human beings. Even Specialists don’t know everything there is to know about their specialty. I finally have reached the point where I stand up to my doctors or refuse to make appointments with those who have not treated me right. I have also even begun to stop believing it when doctors say there is no hope of healing. Sometimes they might be right, but sometimes they might be wrong. I’ve started praying for healing for things that other people have given up on. God is, after all, the Great Physician and our healer.

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